Jacky Davies and Ilora Finley debate the Assisted Dying Bill set to be read in parliament next month. They debate whether the bill’s provision requiring a High Court judge to approve patients for assisted death is enough to protect vulnerable people.
Progress report on the new approach to care in the last days and hours of life: one year on from the ‘One Chance to Get it Right’ report.
This report shows the progress organisations have made on specific commitments in the One Chance to Get it Right report, which set out actions to improve care in the last days and hours of life.
The update sets out progress made on:
- the new Care Quality Commission inspection regime for end of life care
- new NICE guidance
- actions to improve education, training and research
- professional regulation
- the implementation of the priorities for care
BMC Palliative Care 2015, 14:36
There is an urgent need to develop an evidence base for children’s palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research.
The International Children’s Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe.
A list of 26 research areas reached consensus. The top five priorities were: Children’s understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children.
Information from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.
Background: People with advanced cancer require a range of health, social and informal care during the final phases of life. The cost of providing care to this group as they approach the end of their lives is unknown, but represents a significant cost to health and social care systems, charities patients and their families.
Aim: In this study, we estimate the direct and indirect costs for lung, breast, colorectal and prostate cancer patients at the end of life (from the start of strong opioids to death) in England and Wales.
Methods: We use a modelling-based approach to estimate the costs of care. Data are estimated from the literature and publicly available data sets. Probabilistic sensitivity analysis is used to reflect uncertainty in model estimates.
Results: Total estimated costs for treating people with these four cancers at the end of life are £641million. Breast and prostate cancer patients have the highest expected cost per person at £12,663 (95% credible interval (CI): £1249–£38,712) and £14,859 (95% CI: £1391–£46,424), respectively. Lung cancer has the highest expected total cost (£226m). The value of informal care giving accounts for approximately one-third of all costs.
Conclusion: The cost to society of providing care to people at the end of their lives is significant. Much of this cost is borne by informal care givers. The cost to formal care services of replacing this care with paid care giving would be significant and demand for care will increase as the demographic profile of the population ages.
Reference: Round, J, Jones, L and Morris,S. Estimating the cost of caring for people with cancer at the end of life: A modelling study. Palliative Medicine. Published online before print July 21 2015.
Advance care planning is a targeted intervention that promotes autonomy for end-of-life decisions. It is particularly important in dementia where the illness impairs individuals’ decision-making abilities. Patients with advancing dementia experience significant comorbidities such as malnutrition and dehydration. They may have no advance care plan (ACP) in place and this can pose difficult management questions for their families and attending physicians concerning palliation and end-of-life care.
This narrative review aims to assess the factors that affect the clinical use of advanced care planning and palliative care interventions in patients with dementia, and to help guide future primary research, systematic reviews and service development in the UK.
Fulll text available at The British Journal of Psychiatry
Advance care planning and palliative medicine in advanced dementia: a literature review.
BMC Palliative Care 2015, 14:33
Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID.
This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts.
A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis.
Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families’: relatives and care staff.
Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person’s needs, ‘reflection’ on their own emotions and caring relationships, ‘attentiveness’ to the ID person’s wishes and expressions of distress, ‘responsibility’ for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing’ the care with others.
End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.
via BMC Palliative Care | Abstract | ‘From activating towards caring’: shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians.
The draft guideline is out for consultation with stakeholders between 29 July 2015 and 09 September 2015.
A few of the main points are detailed below:
Recognising when a person is in the last days of their life
If it is thought that a person may be dying, information should be gathered on their:
- clinical signs and symptoms, and medical history
- the person’s goals and wishes, as well as their psychological and spiritual needs
- the views of those important to the person with respect to future care
The assessment of their clinical state should be made on a team basis and not just by one individual. The assessment should be reviewed at least every 24 hours.
Establish their communication needs, their current level of understanding and how much information they want to know about their prognosis. If patients or their families do want information, staff should discuss any concerns they have, while avoiding giving false hope.
Shared decision making
Find out how much the person wants to be involved in terms of shared decision making when it comes their care plan. As part of this process, find out whether the person has an advanced care plan or decision in place, as well as their goals and wishes.
A dying person should always be supported if they wish to drink and are able to, though it is important to check for potential risks, such as swallowing problems.
Encourage friends and family to help with giving drinks and mouth care. Provide any necessary aids, such as sponges.
Discuss the risks and benefits of clinically assisted hydration, such as intravenous feeding, and their wishes about its use. It is also important to make clear that clinically assisted hydration is unlikely to prolong life.
Discuss what level of symptom control they would want in the last days of their life, as well as the possible benefits and harms of any medicines offered.
The plan for pharmacological interventions should be regularly reviewed.
Read the NHS choices article via NICE produces new draft guidelines on caring for the dying – Health News – NHS Choices.